slider-aidan-patient-story no caption.jpg

IMPROVING LIVES

Read our latest patient story, from Aidan.

Welcome to IamGSD!

   

Our information is prepared in English, with a German option.

  

On the “Languages” button you can learn about using the Google Chrome browser to enable you to read our automatically translated site in your choice of 100 languages.

  

Many of our printed publications are available in several languages in addition to English.

MUSCLE GLYCOGEN STORAGE DISEASE

nmd-cover-200x200.jpg

October 2021

CLINICAL PRACTICE GUIDELINES ACCEPTED

An international team of expert clinicians and researchers, led by IamGSD President Dr. Stacey Reason, has agreed Clinical Practice Guidelines for GSD V (McArdle disease) and GSD VII (Tarui disease). These diagnostic and management recommendations have been accepted by Neuromuscular Disorders, the journal of the World Muscle Society.  

bhai-salman.jpg

September 2021

DR. SALMAN BHAI JOINS S.A.B.

Following the recent retirement of Dr. Ronald Haller from our Scientific Advisory Board, we are very pleased to announce the appointment of Dr. Salman Bhai to the board. You can read more about Dr. Bhai on our S.A.B. page. Our sincere thanks go to Dr. Haller for his service on the board since our inception.

reneo-logo-200x200.png

September 2021

RENEO KEY OPINION LEADERS WEBINAR

Reneo Pharmaceuticals, focused on therapies for rare, genetic diseases, has announced a key opinion leader webinar on McArdle Disease and mitochondrial myopathies on Monday, October 4. This will feature Prof. Rosaline Quinlivan, M.D., from the NHNN, London, who is the clinical lead for the UK service for McArdle disease and related disorders.

gsd3-infographic-icon.png

September 2021

GSD3 INFOGRAPHIC LAUNCHED

Recently IamGSD shared an online global survey for GSD3 on our website. The survey has been finalized and much of the results are captured in an infographic, publicly available now. Go to our GSD3a page for more details and a link to download a PDF of the survey report.

research-gym-small.jpg

September 2021

TWO NEW PAPERS ON MCARDLE’S

Details will shortly appear on our “Research papers” page.

• International patient group harnesses social media to help inform rare disease research: use of a low carbohydrate ketogenic diet.
• Phenotype and genotype of 197 British patients with McArdle disease.

agsdus logo.png

September 2021

AGSD US CONFERENCE

Held online due to Covid, the dates were from September 10, registrations closed September 15. For those who registered all presentations remain available until October 31. For everyone else our five presentations remain available on our YouTube channel.

NEWS

NEWS

PUBLICATIONS

 

at-leaflets-composite.jpg

IAMGSD has publications in English (a few other languages) to support people with McArdle disease, their families, schools, employers and doctors. 

COURSES

 

Learning management techniques on a walking course.

IAMGSD promotes walking courses to help people improve their condition. These have so far been held in the USA, UK and Germany, with more countries to be included in future. 

CAMPAIGNS
Our campaigns of activity and awareness raising.

IAMGSD campaigns for early diagnosis of McArdle’s and other mGSDs, the adoption of international standards of care and the provision of centres of expertise.

 

RESEARCH
Our research agenda for muscle GSD.

IAMGSD works to identify the needs of people affected by McArdle disease and other muscle GSDs, and to stimulate, encourage and support research efforts to meet these needs.